Family caregivers' 'labor of love' helps seniors, disabled adults live at home for as long as possible

Sunday

Jan 27, 2013 at 12:01 AMJan 27, 2013 at 8:24 PM

Carolyn Lazaris had to quit her job and leave her home to care for her 95-year-old father who suffers from Alzheimer’s.

Deborah Allard

Carolyn Lazaris had to quit her job and leave her home to care for her 95-year-old father who suffers from Alzheimer’s.

Not far away, Alda Medeiros is caring for her son Justin, a 23-year-old with cerebral palsy.

Both Lazaris and Medeiros are among a growing population of family caregivers who knowingly and often cheerfully sacrifice their own lives to care for those they love.

In fact, the Centers for Disease Control and Prevention estimated more than 34 million caregivers nationwide. Some 83 percent of caregivers are family members.

The family caregiver role has become so prevalent that the U.S. Bureau of Labor Statistics in 2011 began asking census takers if they cared for an elder.

"The goal is to help most people remain at home for as long as possible," said Michelle Jesseaume, a family caregiver support provider at Bristol Elder Services, based in Fall River.

Caring for her elderly dad

Lazaris, like many family members in similar situations, said a nursing home is out of the question for her father.

"I can do this," Lazaris said. "If I put him there, I really believe he’d disappear. Besides, I’d spend all my time there."

Instead, Lazaris, left her home in Somerset and moved into her parents’ Taunton home after her mother died in April of 2012. Out of respect for her parents, she declined to use their names.

Lazaris’ dad is a decorated World War II Army veteran who grew up in Taunton and married his high school sweetheart after the war. They had two children together and remained in their hometown. He worked for the U.S. Department of Labor as an administrator in Boston and commuted every day until he retired at the age of 80. Her mother was a medical records librarian at Taunton State Hospital.

The couple in their older years cared for each other, with Lazaris and her brother helping out "around the edges," she said.

"They were married for 66 years," Lazaris said. "They were very, very close."

Today, Lazaris’ father is mainly homebound and relies on his daughter for care and support.

"It’s not that unusual to give up huge pieces and chunks of your life" to care for a relative, Lazaris said.

Lazaris’ father suffers from Alzheimer’s, the most common form of dementia. Alzheimer’s disease can cause memory loss, confusion, irritability, language difficulties, and sometimes aggression.

Lazaris said her father is "more comfortable and more at ease" being in his home, in his familiar surroundings. By leaving her job, she’s able to grocery shop and run errands during the time health care workers are with her dad.

Then, she can spend time with him in her leisure.

Lazaris said the stress of working and caring for her dad was simply too much.

Lazaris was a caregiver support specialist at Bristol Elder Services, so she knew what the caregiver role would entail.

"This is not a marathon," Lazaris said. "It’s a sprint. It could be a month or five years."

Still, Lazaris admits to wanting her life back — but, not really, not if it means her father’s decline to a nursing home or his death.

"The way you get your life back is not what you want to have happen," she said.

Lazaris said she misses just going out on her own and not worrying what time she’ll be back. She misses getting up really early and taking her dog out for a walk. She misses having her grandchildren sleep over at her house. And, her house — that’s another thing she misses.

Despite preparing meals, doling out medication and being her father’s daughter, friend, and support system, she said it’s "absolutely worth it."

"My parents were wonderful people," Lazaris said. "They were there for everyone."

Caring for her adult son

"Mommy’s going to put you in the chair," Alda Medeiros said to her son Justin.

She knew just the exact moves required to heave him up from the bed and get him seated, all without throwing out her back.

It’s been more than two decades of caring for her son, and still a "labor of love."

Medeiros knew there was something wrong with her son when he was a baby.

He survived coming into the world via C-section at just one pound some three months early, and then undergoing surgery for medical conditions.

At a year old, Justin wasn’t crawling or sitting up. Medeiros took him to Boston where he was diagnosed with cerebral palsy, a congenital disorder that involves brain and nervous system function.

"I was 19," Medeiros said. "I really didn’t think about what it meant. I was very positive."

Today, Justin is 23 and suffering the effects of cerebral palsy. He uses a wheelchair and can only take a few steps with a walker.

Medeiros has retained her positive attitude, but admits that it "can get overwhelming."

"I’m his mom. I’m his caregiver," Medeiros said. "Sometimes I want to just go out."

Medeiros said outings have to be planned. There’s the issue of getting Justin into a regular van that is not wheelchair accessible, and thoughts of where they can go that is easily accessible. If it’s just she and her son, she also has to consider bathrooming.

"I can’t take him to the ladies’ room," she said. "He’s an adult."

Medeiros said that with the help of support programs through the Arc of Bristol County, she’s gotten case management and so much more.

The Arc is working to acquire grant funding to purchase a new handicapped accessible van with a wheelchair lift for the family. They are also working on getting other assistive technology to help Justin read and write.

"I don’t know what I’d do without them," Medeiros said.

Medeiros, 43, left her job as a pharmacy technician some years back to have more time to care for her son. She currently cleans houses on the side for some extra money while Justin attends adult day care.

She and her husband, Justin, and their other son, were living in Fall River, taking up the second and third floors of a tenement house until about a decade ago.

When transporting Justin up and down the stairs got too tough, they purchased their spacious Westport home, perfect for getting around in a wheelchair.

"I want to leave my home for Justin," Medeiros said.

Despite the cooking, cleaning and caring for her adult son, Medeiros said it’s really no bother at all.

"He’s wonderful," Medeiros said, pulling her son in for a kiss. "He makes my job easy. He never complains."